After my last extremely traumatic hospital experience, and the almost equally traumatic one before that, I have done a lot of thinking.

Every single hospitalization I have had, starting at age ten, has involved extreme pain, late pain meds, messed up medication orders, and extreme anxiety at some point. On top of that, lately, almost all of my hospitalizations have involved extreme amounts of anxiety to the point where I have been worked up into hysteria. That is not okay.

As my disease process progresses, I have noticed that I have been in and out of the hospital so much more often. I am constantly on edge worrying about when I am going to end up in the hospital next, and thinking about what horrible things they might do to me this time.

That is too much for me. I can't handle it, and I shouldn't have to.

According to my doctors (and confirmed by the way i can feel my body shutting down), I have less than a year to less than two years left to live. I don't want to spend that time being traumatized in hospitals, and I definitely don't want to die in a hospital surrounded by cold uncaring nurses and doctors to whom I am just another patient.

When I go, I want to pass surrounded by people who love and care for me and know who I am, and what my wishes and needs are. While I am living out the rest of my life, however long or short it might be, I want people to attend to me in the ways I deserve to be attended to.

Because of this I have decided that I will stop going to the hospital.

No matter what.

If I develop a line infection or my UTI goes septic again, we will attempt to treat it outpatient with IV antibiotics at home and an outpatient-scheduled central line change or catheter change. If it is something that can not be managed at home, we will use my pain meds to keep me as comfortable as possible and let me go in peace.

I am done with hospitals forever.

On a happier note, I have been using my writing to help distract myself from heavy thoughts that can be draining to think about for too long.

Check out my latest blog post, A Date With Jeff? to read about how Melody one of my PCAs in 2016 quickly became aware that Jeff (my life partner of almost seven years, who passed away in September of 2020) and I were desperately in love with each other, but that Jeff was too scared to ask me out because of our 16 year age difference and the fear of rejection, and I had no idea I was in love with him due to my developmental delay.

One day Melody decided to play matchmaker and got me to realize that I really did love Jeff in a romantic way, she offered to bring us on a date to Build-a-Bear workshop, our favorite store. To find out if I actually agreed to the plan, you will have to read the post here.​

Love you so much and Happy Reading,

Becca Pava

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